The lifesaving newborn test most Canadian babies will never get

WATCH ABOVE: SCID, also known as bubble boy disease, impacts one in every 30,000 births, and if it isn’t caught early those children often die. As Heather Yourex reports, although several provinces screen newborns, in Alberta it’s not “top of mind."

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Bella Thomson is still adjusting to life at home in Saskatchewan. The two-year-old had never seen her family’s house until just a couple of months ago because until then, she had spent most of her young life in hospital.

“Her first year was filled with surgeries related to complications with her bowel,” Bella’s mom Kyla Thomson said.

“She was always on antibiotics, because she was always sick and we didn’t know why.”

Bella Thomson spent over two years in hospital being treated for SCID.

Kyla Thomson

After eleven months of unexplained illnesses, Bella was finally diagnosed with a rare form of Severe Combined Immune Deficiency (SCID). It’s estimated SCID impacts one in about 32,000 births. Newborns with the disease are not able to fight off infections. They may appear healthy at birth, but can develop life-threatening infections within the first few months of life.

“Most of those children – if we don’t catch it right away – will pass away by one year of age,” Jill Miko, clinical coordinator with the Maritime Newborn Screening Program, said.

WATCH: An early detection blood screening test in the Maritimes can help save the lives of newborns with SCID. Severe combined immunodeficiency disorder eliminates the ability for infants to fight common infections. Global’s Alexa MacLean spoke with the team behind this medical breakthrough.

Beginning this week, all newborn babies born in Prince Edward Island, Nova Scotia and New Brunswick will be screened at birth for SCID. Ontario has been screening infants since 2013–but for the rest of the country, newborn SCID screening is not yet available.